This is our story: A qualitative research report on living with dementia, commissioned by Alzheimers New Zealand, is based on interviews with 49 New Zealanders who either have dementia or are caring for someone who does.
The aim of the research is to support people with dementia, raise awareness and prompt an upscale of services.
Alzheimers New Zealand chief executive Catherine Hall said the research shines a much-needed light on what people living with dementia need, both from friends and family, and from the health sector; which often lets them down badly.
“It’s a really insightful look at what is needed to live well with dementia…which is hard to do because of stigma, discrimination and lack of services.
“These are real people talking about their day-to-day struggles with a health sector that provides woefully inadequate services and support. Hopefully this research will be heard and listened to at The Beehive.”
During the research many participants and their care partners said they felt fearful receiving a diagnosis because they did not know what services were available and they were worried about being treated differently by friends, family and society.
“They’re still people. Once someone is diagnosed with something, they’re almost handicapped. People treat them as if they can’t do anything anymore… I just want her to continue as normal like it’s not a big deal. And when you treat it that way, she’s just accepting of it,” one care partner said.
Some experienced disbelief, sadness and anger and felt as though the life they were enjoying was over and their future looked bleak.
“I feel depressed. No cure, no hope. I can’t help and do the physical things I used to. For example, hobbies. I was interested in making a model yacht… I just lose concentration, and my hands would start shaking… I’ve got no interest in doing hobbies, I couldn’t do them to the same extent,” an older male with dementia said.
Hall said dementia, which is one of New Zealand’s most significant and growing health care challenges, does not have to define a person’s life and many people lived meaningful lives following a diagnosis.
“Our hope is that the research is useful for other people with dementia as it will give them an insight into what’s ahead as well as knowing they are not alone. Also, it will help…society to understand what it is like to live with dementia. And lastly, but most importantly to prompt an upscale of services.”
Liz Smith of Litmus, who conducted the research, said participants were given the opportunity to share their experiences through interviews that were conducted in people’s homes.
“The interviews themselves were so interesting. Everybody has a story to tell and it’s always an honour and privilege when people share theirs.
“There are a lot of people with dementia living well and living very meaningful lives.”
Participants later contacted Litmus to say how much they enjoyed being able to tell their stories knowing someone was listening, she said.
“I hope the research will help people with dementia diagnoses and care partners…to shed light on the stigma people see day-to-day living with dementia, the hurt and isolation.”